Walking Backwards with a Backpack of Bricks*

One of the difficulties of being a “high functioning” autistic is that it is in a way an invisible disability.  For most people, when they look at someone like me, they see a “normal” person.  Because they see a person that seems to act just like them, it makes it hard to understand when things go wrong in that person’s life.   For the uninitiated, some difficulty looks more like laziness or being defiant which can have severe consequences in the high functioning autistic’s life.

The sad thing is that the uninitiated is basically everybody.  There are a few folk who “get it” and are able to accomodate and encourage the high functioning autistic, but most people don’t understand it, even when you try to explain it.  And the result down the road are broken relationships and (possibly) fractured employment.

Physician Lisa Jo Rudy writes about the problems that someone with high functioning autism faces.  I want to share a few that I have faced in my own life:

Social “cluelessness.”  What’s the difference between a civil greeting and a signal of romantic interest?  How loud is too loud?  When is okay to talk about your personal issues or interests?  When is it important to stop doing what you enjoy in order to attend to another person’s needs?  These are tough questions for anyone, but for a person on the high end of the autism spectrum they can become overwhelming obstacles to social connections, employment, and romance.

Anxiety and depression.  Anxiety, depression, and other mood disorders are more common among people with high functioning autism than they are among the general population.  We don’t know whether the autism causes the mood disorders, or whether the disorders are the result of social rejection and frustration – -but whatever their causes, mood disorders can be disabling in themselves.

Lack of executive planning skills.  Executive functioning describes the skills we use to organize and plan our lives.  They allow typical adults to plan schedules in advance, notice that the shampoo is running low, or create and follow a timeline in order to complete a long term project.  Most people with high functioning autism have compromised executive functioning skills, making it very tough to plan and manage a household, cope with minor schedule changes at school or at work, and so forth.

Difficulty with transitions and change.  Lots of people have a hard time with change — but people with high functioning autism take the issue to a whole new level.  Once a pattern is established and comfortable, people with autism (by and large) want to maintain that pattern forever.  If a group of friends goes out on Wednesdays for nachos, the idea of going out on Thursdays for chicken wings can throw an autistic adult into a state of anxiety or even anger.

Difficulty with following verbal communication.  A person with high functioning autism may be more than capable of doing a task — but unable to follow the spoken instructions provided.  In other words, if a policeman says “stay in your car and give me your license and registration,” the person with autism may process only “stay in your car,” or only “give me your license.”  The same goes for instructions given, say, at a ballroom dance class, at the doctor’s office, or by a manager in an office setting.  As you can imagine, this can cause any number of issues, ranging from serious problems with the police to inadvertent mistakes at work.

Most of my difficulties come to fore in two areas: relationship and employment.

When it comes to relationships, I am usually bad at figuring out social cues and basically how to be a good friend.  The message it sends is one of being aloof and it tells someone that I don’t care, which may be the farthest thing I want.

When you realize this, that’s when the anxiety comes in.  Questions flood my brain.  How do I act? What do I say?  How do I try to look cool and try to “pass?”  All of this uncomfortableness makes me want to distance myself which causes people to again think I’m cold and uncaring. (I’m this way even online.  It takes me a while to compose a note to someone; fearful I’m going to say the wrong thing.)

So a lot of my interactions is trying to make connections, missing laughably by a country mile.

I don’t want to paint too bleak a picture.  I’ve learned to be a better employee and handle changes.  I’ve been able to control my emotions, making meltdowns less common.  And while they aren’t as close as I would like them, I do have friends.  But all of this had to come from lots and lots of hard work.  What might seem easy for others is a challenge for me.  They aren’t insurmountable, but they are still challenges.

I’ve seen friends that seem to just make friendships with ease.  I’m always a bit envious of them, because I am not that smooth and it seems at times I do more to drive people away than keeping them close.

When it comes to changes in schedule, I’ve been better at handling them, but I can feel how unsettled I feel.  It feels like everything is out of control; chaotic.  My mind races thinking about how everything is out of sorts.  But I’ve learned to be a good actor and not show my emotions ( or meltdowns).

What I’m trying to get at here is that being high functioning or mildly autistic doesn’t mean that life is easy.  It’s just different.  The challenge for me is how to live in a world that seems so different than me.

And that has challenges all of its own.

*The title of the blog post is a take on the quote on Ginger Rogers, the one where she does everything her dancing partner Fred Astaire did, but backwards and in high heels.  For me, walking backwards with a backpack of bricks describes what it is like for me to be high functioning in a world where you still don’t fit.